Pathway to Diagnosis (or not)!
The next day I decided to read up on what autism is, I had no idea at the time! Everything I read struck a chord and I began to wonder if this could apply to me. I took a free online AQ screening test[1] and I scored 46 out of 50 (92%). That was enough for me to contact my GP and arrange an appointment.
My GP could see me straight away, one of the benefits of living in an underpopulated part of Scotland. He was very good but after asking a few questions he revealed that in Dumfries and Galloway there is no pathway to a diagnosis of autism for adults. He explained how much of a travesty he thought this was and suggested we could fight it and get a special exception to use another external authority to get a diagnosis through. He said it would be a “rocky road” but that it may be possible and he lined up an appointment with the mental health nurse to discuss this route further.
The waiting list for diagnostic assessments as an adult in the UK (where it actually exists at all) is usually listed as between, a rather unacceptable, one and five years! The actual statistics are generally longer that that. Even childhood diagnosis is seeing waiting lists of over five years. The official NHS statistics do not reflect what is actually experienced and this may require some further investigation at some point.[2]
For adult diagnosis it is a process that quite correctly prioritises those who are experiencing serious issues with daily living. As someone who can afford a to pay for an assessment and someone who doesn't see a lot of negatives from Autism I didn't feel an NHS funded assessment was a viable or justifiable way forwards for me. Also waiting for anything isn’t one of my strengths and I ended up researching a route to diagnosis by a private assessment.
After finding a company that was reasonably priced and had good reviews (RTN Mental Health [3]) I made an appointment. For an assessment to be recognised by the NHS in the UK you should ensure that the company follow NICE[4] guidelines.
The process for diagnosis starts with some information gathering and a fair amount of forms to complete;
- Consent Form
- Diagnostic Assessment - Basic Information
- Beck Anxiety Inventory
- Beck Depression Inventory
- Autism Self Report
- Social Responsiveness Scale Self-Report
- Short Sensory Profile
- Child Development History
- Toronto Alexithymia Scale (TAS-20)
- Extreme Demand Avoidance
There are also some forms to be completed by someone who knows you very well, in my case this was my wife. After all of these have been submitted you will be invited for an online interview with a clinical psychologist.
The timing was all really fast, the initial assessment forms came as soon as I had registered and my wife and I completed them over the weekend. Again RTN came back the very next day with an appointment date just two weeks away. The appointment is for an online webcam based assessment interview. The actual interview lasted an hour and a half and was conducted by a clinical psychologist called Dr Ann Steele. She was vey good and made me feel at ease very quickly. She let me know the results of her findings at the end of the interview and that the full diagnosis and feedback will come at a later date.
She said that she had no hesitation in giving a diagnosis of autism so it was nice to have a conclusive result. I kept up with the appointment with the mental health nurse at my GP's surgery so that the diagnosis can be added to my records.
The waiting list and, in certain areas, lack of any pathway to diagnosis is really not good and many adults end up self diagnosing which while perfectly valid is not always recognised when trying to get the support they require.
[1] Free online AQ test, https://psychology-tools.com/test/autism-spectrum-quotient
[2] Official Autism Waiting Times, https://digital.nhs.uk/data-and-information/publications/statistical/autism-statistics
[3] RTN Mental Health, https://www.rtnmentalhealthsolutions.com/autism-diagnostic-assessment
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